Haywood, Kirstie L, Staniszewska, Sophie, Chapman, Sarah · Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2012 · DOI
This study looked at questionnaires and surveys used to measure how ME/CFS affects patients' health and quality of life. Researchers reviewed 77 different measurement tools and found that most of them were not thoroughly tested or proven to work well. Importantly, patients were rarely involved in creating or improving these questionnaires, even though patients know best what matters to them.
This work highlights critical gaps in how ME/CFS outcomes are measured in research, showing that current questionnaires may not capture what matters most to patients. Better, patient-centered measurement tools are essential for ensuring that research studies truly reflect patients' experiences and needs, ultimately improving the relevance and quality of ME/CFS research.
This systematic review does not establish which specific outcome measures are superior for clinical practice, nor does it provide evidence about the actual effectiveness of any particular measurement tool. It identifies methodological gaps and quality issues but does not demonstrate solutions or propose validated alternatives.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Haywood, Kirstie L, Staniszewska, Sophie, & Chapman, Sarah (2012). Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. https://doi.org/10.1007/s11136-011-9921-8
BibTeX
@article{mecfsatlas-haywood-2012-quality-acceptability,
author = {Haywood, Kirstie L and Staniszewska, Sophie and Chapman, Sarah},
title = {Quality and acceptability of patient-reported outcome measures used in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review.},
journal = {Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation},
year = {2012},
doi = {10.1007/s11136-011-9921-8},
note = {PubMed: 21590511},
url = {https://www.mecfsatlas.com/evidence/haywood-2012-quality-acceptability},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-25. https://www.mecfsatlas.com/evidence/haywood-2012-quality-acceptability
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